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2017 Top-Rated Nonprofit

Neuroendocrine Cancer Awareness Network Inc

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Nonprofit Overview

Causes: Cancer, Cancer Research, Digestive Diseases & Disorders, Health

Mission: WE'VE CHANGED OUR NAME FROM CCAN TO NCAN TO BETTER REFLECT THE COMMUNITY WE SERVE. NCAN is a 501 (c) (3) non-profit incorporated in 2004. Our Mission is to intensify awareness of Neuroendocrine Tumors & Carcinoid Cancer in both the medical community and general public- locally and around the world. NCAN also assists patients and caregivers by providing access to important information about the disease. We provide funding for research into Carcinoid Cancer and other neuroendocrine tumors.

Results: Because neuroendocrine tumors (NETs) are rare cancers with no celebrity spokesperson or widespread recognition, patients need to be their own best advocates in bringing the most current information available to their physicians. For the past 13 years NCAN has provided information and support to NET patients and caregivers through e-mail, our web site, and toll free phone number 866-850-9555. Our phone line is open 7 days a week 9 am - 9 pm EST. We are the only foundation opened on weekend and holidays to get your questions answered. The phones are answered by a patient (Maryann) or a caregiver (Robert). Thousands of free information packets have been mailed to patients and other interested parties on request. We've provided many support groups worldwide with information, merchandise, awareness items and financial support. Did you ever wonder where the Zebra mascot got started, or those stuffed zebras and zebra bracelets came from? Designed by NCAN back in 2003. You can say we were “The Original ZEBRA”. We decided since no two Zebras stripes are the same and No NET Cancer patients are the same to use it. Since then over 500,000 bracelets have been distributed to date. We also distribute other awareness items such as sweatshirts, hats, tote bags, rulers, lapel pins, Christmas ornaments and car magnets. www.netcancerawareness.org NCAN has been honored with Great Nonprofits Top-Rated Award every year since 2011. NCAN was the founder of Worldwide NET Cancer Day with Novartis Pharmaceutical. NCAN has produced over 55 Patient conferences across the USA since 2003. This year we are expanding our outreach, providing Medical Education with CME and CU credits. NCAN is currently seeking funding for a Fellowship program to bring more medical professionals into the field of NETs NCAN works closely with the pharmaceutical companies to get the most updated information regarding treatments coming in to clinical trial and the pipeline. NCAN now includes the 6,000 patients who are part of the ‘Whipple Warriors’ in our non-profit family. NCAN is a proud member of the World Pancreatic Cancer Coalition An NCAN board member has served as an adviser on the following boards: - SPORE External Advisory Board as a Patient Advocate 2011 - present. - NANETS from 2009 - 2016, - Healing NET Foundation 2014 -2016

Target demographics: Neuroendocrine Cancer Patients and their Families as well as medical professionals

Geographic areas served: Locally, Nationally, & Globally

Programs: We have a toll free hotline opened 7 days a week 9 am - 9pm EST. The phone is answered by a Patient or Caregiver at all times. We send out free information packets to anyone interested. NET Conferences for Patient, Caregiver, and Medical Professionals. Our NET Patient conferences , and Medical professional events across the county!

Community Stories

118 Stories from Volunteers, Donors & Supporters

1

Advisor

Rating: 5

I've been a part of several awareness networks and peripherally involved with many more Cancer groups, and NCAN is easily at the top of my list. From the top down the people I've met and the resources they offer patients and families is remarkable. And it's constantly being updated, refreshed and adjusted to fit the needs of Neuroendocrine Cancer patients and families. I like that they go to their network to see what the members need, rather than the other way around. Every person I've had contact with in the network--from patients, to the organizers, doctors, speakers and conference attendees-- has been warm, friendly and helpful. Just what you're looking for in tough times. I'm positive this attitude starts and spreads from the top, from the organizers Maryann & Bob. Thankfully there are people (and networks) like this in the world.

Professional with expertise in this field

Rating: 5

Hi Maryann, I'm a nurse who works in adult oncology. I had a patient last night who found his way to us and a very important surgery because of you. I wanted to thank you for what you do and for the ginormous amount of hope and happiness you have brought to this man and his family's life. He was crying tears of joy for the way you changed the path of his life.
Thank you for what you do

Professional with expertise in this field

Rating: 5

The NCAN provides a very unique support for the many patients with neuroendocrine tumors (NETs). When diagnosed with a rare tumor such as a NET, good and unbiased information is hard to find. NCAN organizes outstanding patient-oriented conferences of excellent quality.

Karalyn

Client Served

Rating: 5

Maryann and Bob have changed this cancer. It was once so rare that no one even knew where to start to get help. Because of their consistent effort, hard work and passion for awareness, doctors and patients alike have a place to turn for help and guidance. Thankful for them daily!

Previous Stories
2

Client Served

Rating: 5

I would not be able to see the light at the end of all of the medical decisions we have to make if it were not for Maryann and her husband who put in countless hours for all of us. We have a navigation system in place that seizes to exist without their hard work. All of the information needed is gathered and shared openly and with a kind heart, they guide us to the information and help we need. Carcinoid has made us all connected and we have all learned that you must help one another. The medical world seems to be waking up to carcinoid and all the distinct care people need with this cancer. Without advocates like the Carcinoid Cancer Awareness Network INC, this would not be happening. Grateful for them everyday.

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General Member of the Public

Rating: 5

Top notch organization. NCAN has helped my family when my Mom was diagnosed back in 2007. We attended many of the conferences and received invaluable information from them. We took advantage of the hotline when we had questions and always knew we had a understanding and concerned voice on the other end. Thanks Maryann and Bob for all you do for the entire NET community. You are very much needed and appreciated.

General Member of the Public

Rating: 5

Wonderful information that was informative. Education for Neuroendocrine Cancer that is so much needed. I received my free packet in a very timely manner and refer to it often. Cannot thank this awareness network enough!

General Member of the Public

Rating: 5

I was first introduced to this organization by my BF who was diagnosed with this form of cancer. Despite being a health care professional I had never heard of this cancer nor its prognosis. I read the educational material and became involved with some of the websites and Facebook pages dedicated to this disease. I was very impressed with the sharing of medical providers treating this condition as well as the ability of members to openly share their disease process and ask others with this disease what treatment options they had experienced as well as what worked for them and what did not. My BF was very active in this community and well known by many for her educational push to learn more about this disease and share her education with fellow members. She attended the national conferences and was a spokesperson for this organization involving as many people as possible about Neuroedocrine Carcer Awareness. The disease took her last summer but through this network she left many to carry on where she left off.

General Member of the Public

Rating: 5

I was diagnosed with a lung carcinoid in 2014 from an incidental lung x-ray for another surgery. While recovering I was searching for support & found NCAN. I am very grateful to Maryann & Bob Wahman for starting this organization. I was able to learn more about this disease as well as meet alot of wonderful people.

Sharon Heuser

1

Professional with expertise in this field

Rating: 5

It is an honor to be able to work with and support Neuroendocrine Cancer Awareness Network (NCAN) founder and Executive Director Maryann and Bob Wahmann in their outreach efforts to the NET cancer community. Since Maryann’s diagnosis in 2001, the Wahmanns have devoted their lives to supporting thousands of patients in this rare disease community, annually hosting four regional patient education conferences and holding a national conference biennially. They are constantly striving to expand the information channels they use to reach patients throughout the country—making printed materials available to the 15-plus local patient support groups across the country, holding regular leadership training programs for local leaders, hosting an active online presence through their website and blog – with several thousand visitors monthly – and being available 9 AM to 9 PM 7 days a week for calls which come in from patients around the world. Our experience in working with NCAN can be summarized in a quote by famed anthropologist and humanist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”

1

Donor

Rating: 4

NCAN provides neuroendocrine cancer patients and caregivers with accessible education and resources to assist with their care. In addition to providing personal assistance over the phone and through mailings of information, they host regional education meetings around the US, featuring expert physicians. They are among the most proactive patient support groups, ensuring that patients can have access to resources and education even if they live far away from major metro centers. The heads of this group are patients themselves and they have been bringing awareness and education to this underserved community for more than 10 years.

1

Professional with expertise in this field

Rating: 5

I have worked with NCAN for over 12 years. They are dedicated and committed to help raise awareness and educate patients and healthcare providers throughout the United States. Over the years, there have been significant advances in diagnostic and therapeutic options for patients with advanced neuroendocrine tumors (NETs). Therefore NCAN has expanded their organization to bring this new information to the NET community. As the treatment landscape changes, NCAN is determined to create programs to address the ever changing needs of patients and assure medical professionals are properly trained to manage patients with these rare diseases.

1

Client Served

Rating: 5

A diagnosis of neuroendocrine cancer can be a bewildering experience. NCAN provides a wealth of information. The organization makes conferences possible. Bob and Maryann are like family. They add a personal touch, being there when help is needed. Just knowing that NCAN exists makes the experience of having this cancer manageable. If I leave a message, it is promptly answered. I am treated with courtesy and kindness. It is a blessing to have this oasis while dealing with a complex cancer.

1

Client Served

Rating: 5

I had a library neuroendocrine awareness display in my town on and Maryann sent me very helpful information as handouts. Last year, I was refused the drug Afinitor by my insurance company and my first call went to Maryann and Bob and they listened and offered suggestions. I've also been to two conferences sponsored by NCAN and it empowered me to know more about my disease.

1

Volunteer

Rating: 5

I was diagnosed on my 45th birthday 2005, and didn't know where to start.
Got appt with Dr Warner for April ,2 mos away...what to do with 2 months?
Went online and discovered Carcinoid Cancer Network, and got information to start my journey.
Am now a volunteer counselor at NCAN, as I truly believe the help of this organization needs be available to anyone who receives a diagnosis of neuroendocrine cancer.
I know, having reached out to new members, NCAN is doing great things.

1 Toba W.

Client Served

Rating: 4

Is this what you were speaking of Maryann? I thank you for and appreciated the Initial Packet, and being there to "talk" and offer help. I tried to post a photo and it won't let me.

1 Aleeta J.

Client Served

Rating: 5

This nonprofit is desperately needed. Neuroendocrine cancer is becoming more known, but over the past 10 years, so few doctors knew how to deal with NCAN patients. Thanks to the information provided by this non-profit, patients can now help their doctors navigate this difficult and rare disease. Thanks NCAN!

2 Kym O.

Client Served

Rating: 5

When I was diagnosed with a NeuroEndocrine tumor in my lungs four years ago, like everyone else, my husband and I had never even heard of this rare cancer. We felt so lost, and alone. Where were the pink ribbons and races for family & friends to show their support, for us to find support and most importantly - accurate information to keep me ALIVE?

I had been given less than 30 days to live - my children were only 5 and 11 years old! My husband and I were on a deserted island and the water was rising quickly --- then an amazing woman named Maryann Wahmann entered my life - a NET cancer patient herself and the founder/president of NCAN. She spent an HOUR on the phone with me, teaching me about my disease, telling me where I could find specialists who knew how to treat me, assuring me that we were not alone, and there WERE things I could do! The phone call that started in hopeless tears finished in laughter and tears of joy, purpose and relief.

Within days, I received a huge packet of information and even zebra print advocacy bracelets (don't underestimate how much these mean). My husband and I cried and clutched that information packet like the life-saving treasure it was. NCAN asked for nothing, and gave me everything.

WIthin a year of my diagnosis, not only was I ALIVE and doing great, I had also started a support group for other lung NET (aka Lungnoid) patients and their caretakers (Lovable Lungnoids). Maryann and NCAN partnered with NET specialist Dr. Eric Liu, and Lovable Lungnoids, and gave us the worlds first lungnoid conference! NCAN did all the work, got all the funding, hosted an incredible event and allowed me to have my support group's name be part of it all. They flew world NET experts in from Sweden (!!!) and arranged for 125 patients to come together for an incredible weekend of support, information and encouragement like never before in history. We got to see not one but TWO NET specialists together in clinic visits in the days before the conference. MANY lives were saved with that one week, and without NCAN, none of it would have been possible. To top it off, NCAN was able to donate 10k to NET cure research as part of our gathering. The cost to attendees? $20 including a delicious healthy breakfast ~and~ lunch. Incredible.

Heartfelt thanks, Maryann, Bob, Tricia, Tom and everyone at NCAN for all you do and for being the first organization to recognize and help the lungnoid community (now 1500 members strong). You're the best!

Previous Stories
5

Client Served

Rating: 5

CCAN is such an amazingly helpful & important nonprofit! Cases of carcinoid cancer increase daily yet so little is known about this unpredictable disease. As a patient, my misdiagnosis of cancer for nearly a DECADE and doctors with grossly outdated knowledge, is sadly the common experience. Even after carcinoid is confirmed, most don't know what to do so they treat it like other more commonly understood cancers - which can be deadly to carcinoid patients. CCAN's work reaches far across the realm of carcinoid....24 hour patient & caretaker hotlines, free mailed info packets, support group funding, social media awareness, educating patient, public, pharma, and medical teams through innovative seminars and dozens of conferences each year. CCAN also coordinates large donations toward research by working with pharma. There is no CEO or other salary here, CCAN is actually a very special family dealing with carcinoid cancer themselves and working passionately to bring awareness, help and HOPE to thousands every year.

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3

Client Served

Rating: 5

Wonderful organization that goes above and beyond in education on NET!!!

4

Client Served

Rating: 5

What a blessing! Maryann at NCAN reached out to me when I joined a Facebook group for Carcinoid peeps like me. I was diagnosed just two days ago. She made it very easy to reach back and that meant a lot as I was feeling quite scared. After talking with her for ten minutes I had learned just what I needed to know to begin this journey and had a printout of what tests I should be sure my Dr. ran. I will be forever grateful to NCAN and Maryann for her kind, caring help.

3 Deb_14

Client Served

Rating: 5

I have been to two of the NET conferences organized and performed by the Neuroendocrine Cancer Awareness Network, Inc. This group is amazingly and self-sacrificing in its mission to promote awareness of NET cancer and to stand by the side of the patient with information, kindness and dare I say Love. The group has a wall on Facebook where almost any question will find an accurate answer. I have deep feelings of gratitude for this group and the people who started it. I have met all of them personally and would be unable to express my thankfulness for the time and energy that they expend for the NET community. THANK YOU NCAN.

Previous Stories
5

Donor

Rating: 5

I can not say enough about this wonderful organization. I went to the first CCAN Lung carcinoid conference in Nashville, TN in April 2013. I met the founder of CCAN, her husband, and her family, all who work tirelessly for carcinoid awareness and the support of carcinoid patients. Before the conference I had been sent a packet of materials including DVDs of past conferences. This information did much to educate me about carcinoid cancer and to give me a sense of hope and renewal. I was no longer alone. Carcinoid cancer is very rare and let's face it most people who don't have it, don't want to talk about it. CCAN Talks. CCAN listens. CCAN has made a positive difference in hundreds if not thousands of people's lives because of their dedicated advocacy. They have made information available to cancer patients, helped to reeducate the medical community about this disease and banish the liaise faire attitudes from the past. One last point, they have also found and built relationships with the top carcinoid/NET doctors around the world. Many of these doctors give of themselves and their time to carcinoid awareness, research, diagnoses, and care. Please consider giving to CCAN. They are a great nonprofit.